'Healthy people take so much for granted'


POSTED: Saturday, January 31, 2009

Kristy Arizumi was unable to indulge in mint chocolate chip ice cream and other favorite foods or try glamour products advertised on TV when she turned “;sweet 16.”;

But she celebrated her birthday last Saturday with “;so much to be thankful for. I'm truly enjoying my teenage life and appreciate the love and support of my friends who try to understand my condition.”;

The Mililani High School sophomore has fibromyalgia—a debilitating disease for which there is no test or cure. She says it “;sometimes gets me down because I'll never be normal and carefree,”; but she is “;finally getting my life back on track.”;

Kristy's health problems began in kindergarten and worsened over the years with severe pain, headaches, blurry vision, stiffness, nausea, dizziness, stomachache, restless leg and body syndrome, frequent urination, fatigue and disrupted sleep.

Yet an array of doctors and myriad tests found nothing wrong, she and her parents, Karen and Tom, explained in an interview. “;Everything was drugs,”; Karen Arizumi said. “;They would sedate her but didn't make the pains go away.”;

After a series of doctors told her “;it was in my head,”; Kristy said she began searching the Internet for her symptoms. Scoring 100 on a fibromyalgia test, she said, “;Wow. This had to tell me something.”;

She went back to her doctor, William Ahuna, now retired from Kaiser Permanente, and asked if she could have fibromyalgia. The symptoms mimic other conditions, but Ahuna said she met criteria for the illness and it was confirmed by a rheumatologist.

“;Nothing I tried seemed to help her,”; said Ahuna, explaining he referred Kristy to Annette Kam, a registered nurse at Kapiolani Medical Center.

Kam, who has suffered about 18 years from fibromyalgia, found a treatment developed by Dr. R. Paul St. Amand of the University of California, Los Angeles, that reversed most of her symptoms.

St. Amand believes fibromyalgia is due to a genetic defect that does not allow the body to flush out excess phosphates, which build up in the muscles, ligaments and tendons.

He uses a “;mapping”; technique to detect swollen areas and prescribes guaifenesin, an over-the-counter drug that eliminates phosphates. Patients must avoid any plant-based lotions, cosmetics or other products that contain salicylates, which interfere with guaifenesin.

Kristy found a May 23, 2002, Star-Bulletin story on the Internet describing Kam's fight against fibromyalgia and a support group she formed called iFoG (Informed Fibromyalgics on Guaifenesin).

She is now one of the group's 1,130 members. The group promotes guaifenesin as a treatment.

“;It was a huge relief to connect with Annette and have her guide us to reversing this mystical disease,”; Kristy said. “;I have occasional bouts with fatigue and joint pain but nothing paralyzing like before.”;

All products she uses must be eliminated if they have salicylates, but she has learned about alternative products from St. Amand's program. She is also hypoglycemic and must watch her carbohydrate intake.

“;The worst thing I had to give up which I sorely miss is mints,”; she said. “;Healthy people take so much for granted.”;

  She also had to give up pasta, her favorite food, but said her grandmother supports her hypoglycemic diet as her “;superb personal chef.”;

iFoG member Vicki Mauck maps many patients to chart their progress and said Kristy at age 15 “;looked like a 45-year-old with her bumps and lumps”; from constantly contracted muscles and swelling.

Kristy said vertigo and crippling headaches left her incapacitated. “;I felt like something was inside my head biting or punching, with pressure inside and out.”;

She became so sick at school in November 2007 that she had to be rolled in a wheelchair to the health room. Her entire right side was numb.

The school placed her on a home-instruction program, and she lived with pain, sleeping pills, antidepressants and other medications through her freshman year. “;My family was very afraid I was going to go suicidal,”; she said.

Relying on doctors who told them tests were normal, Kristy's parents began thinking their daughter was making up the symptoms. “;That's the part I sorely regret,”; said Karen Arizumi, who also has fibromyalgia and started the guaifenesin protocol.

The 16-year-old still has difficult days but has maintained a 4.0 GPA, is in the school's SKILLS USA program and is president for the Graphics Section, said her school counselor, Kellie Young.

She has learning to play tennis, completed driver's education and hopes to get a driver's license soon.

She hopes a story about her struggles with fibromyalgia will help others with the disease “;realize there is hope. You can get better.”;